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中文摘要
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描述(由申请人提供):这个第一阶段STTR项目的总体目标是确定为患有家族性腺瘤性息肉病(FAP)的青少年和年轻人制作基于网络的多媒体干预计划的技术优势和可行性。FAP是一种遗传性结直肠癌综合征。我们的长期目标是开发和评估一种干预措施,该干预措施将提供信息和支持,以促进年轻人的自我管理和应对FAP独特的医疗和心理需求。该项目扩展了我们在德克萨斯大学安德森癌症中心(MDACC)正在进行的关于FAP对青少年和年轻人及其家庭的心理社会影响的研究。此外,它建立在我们在这一领域进行的初步描述工作的基础上,该工作发现,患有FAP的年轻人在这种情况的重要方面存在知识缺陷,并可能从如何应对和管理这种情况的指导中受益。我们提议的干预的长期目标是满足这些人和其他人的这些和其他需求。作为第一步,我们建议开发和测试基于Web的干预原型的可行性和技术优点,并在下一节中描述了这样做的步骤。研究设计与方法。在此第一阶段项目中,我们将首先开发和评估干预内容,包括信息性文本、自助活动、简短视频脚本以及插图和动画描述。接下来,我们将开发和评估一个网站,其中包括干预的四个组件的原型,包括内容、图形和动画。为这一第一阶段项目开发的四个组成部分包括:1)什么是FAP?2)FAP的自我管理3)情感支持资源;以及,)手术干预。最后,我们将从MDACC遗传性结直肠癌登记中心招募35名患有FAP的青少年和年轻人,以评估原型干预的技术优点和可行性。此外,我们会在整个计划过程中,征询专家顾问小组成员的检讨和意见。如果我们证明原型可以被目标受众接受,并且与他们关心的问题相关,易于理解,并且易于导航,那么我们将认为我们的第一阶段项目是成功的。
英文摘要
DESCRIPTION (provided by applicant): The overall goal of this Phase I STTR project is to establish the technical merit and feasibility of producing a web-based multimedia intervention program for adolescents and young adults with familial adenomatous polyposis (FAP), an inherited colorectal cancer syndrome. Our long-term goal is to develop and evaluate an intervention that will provide information and support to facilitate young persons' self- management and coping with the unique medical and psychological demands of FAP. This project extends our ongoing research at The University of Texas M. D. Anderson Cancer Center (MDACC) regarding the psychosocial impact of FAP on adolescents and young adults, and their families. In addition, it builds on preliminary descriptive work that we have conducted in this area, which has found that young persons with FAP have knowledge deficits regarding important aspects of this condition, and also may benefit from guidance on how to cope with and manage this condition. The long-term goal of our proposed intervention is to address these and other needs of this population. As a first step, we propose to develop and test the feasibility and technical merit of a prototype Web-based intervention, and have described the steps for doing so in the following section. Research Design and Methods. In this Phase I project, we will first develop and evaluate content for the intervention, including informational text, self-help activities, brief video scripts and descriptions of illustrations and animations. Next, we will develop and evaluate a Web site that includes prototypes for four components of the intervention, incorporating content, graphics, and animation. The four components to be developed for this Phase I project include: 1) What is FAP? 2) Self-management of FAP 3) Emotional support resources; and, ) Surgical intervention. Finally, we will recruit 35 adolescents and young adults with FAP from MDACC's Hereditary Colorectal Cancer Registry to evaluate the technical merit and feasibility of the prototype intervention. In addition, we will seek review and input from members of an expert consultant panel throughout the course of the project. We will consider our Phase I project to be successful if we demonstrate that the prototype is acceptable to the target audience and relevant to their concerns, easy to understand, and easy to navigate.
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